Wednesday, October 17, 2018

Comments by Michelle B.

Showing 18 of 18 comments.

  • Thank you for sharing your story Mary Ann. I hope more and more people like you (people who work in the mental health arena who also have stories of survival)will speak up.

    I wish I could fast forward ten years, and be the same age 😉 –I’d like to see real and drastic change within the mental healthcare system. I’d like to know that my son has a chance at better care than any of us have had for the past twenty years or so.

    I have a friend who took Ritalin to make it through college, and now sadly, she is so very disabled. She has MS, but she said the meds really did a number on her brain.

    I took the educational classes through NAMI. I learned so much! I was so proud of myself for going, and now, I feel so completely lied to, but then I know the folks teaching the classes were just like me. We believed what was written in the books and the ‘evidence based research’ that made up those classes.

    I look forward to reading more of your writing.

    Good luck to you, and many wishes of healing.

  • Sera, Hello. Your response to Dr. Pies is excellent!

    I want to personally thank you for this post because reading it helps me to more clearly understand my own experience with/in mental healthcare.

    I have plenty of feelings about the past decade of which I have gone through such trials and tribulations trying to be what psychiatrists told me I needed to be if I was interested in helping my adult son, all the while, I had an alternate set of feelings that didn’t coincide with what they were saying. I’ve been the “Fence Sitter,” always choosing between two evils; to treat or not to treat.

    Things changed about two years ago, when an attempt to get my son help within the system went very wrong. I saw great injustice, and an almost unbearable foreboding view of my son’s future if the psychiatrists involved had had their way.

    I need a way to process all of what has happened over the past ten years. I need a way to understand it, talk about it, and do the best I can to find the resources to help my son and our family move on. It is not only my son who is at risk. If we had to go through, again, what we went through the last time we sought help within the system, I’m not sure either of us would survive it.

    I can honestly say that my son has had the best year of his life after firing an ACT team, and moving away from psychiatry, as much as he could. You can’t just stop the medication without help, so we are not altogether free of the system. Even the psychiatrist who has seen him has said, and written in a letter, that he is better than she has ever seen him.

    The story of our lives seems to be talked about in the context of before and after that last time my son was in the hospital.

    I once thought the diagnosis my son received was the worst illness a person can have, and it may well be, but part of that is because the treatment is just as bad, or worse, than the symptoms are and I’m not only talking about side-effects of medication. It is the inequality, the total loss of human rights a psychiatric patient endures and the lies and coercion that exists in the practice of psychiatry.

    I have personally witnessed psychiatrists and their colleagues lie and use coercive methods to get a ‘consumer’ to become compliant. The ones I’ve dealt with, most of whom are considered to be the best in their field, are not ashamed of lying. They say they do it because it is in the best interest of a patient/consumer.

    NAMI’s Family-to-Family program teaches family members how to stretch the truth, or lie if necessary, to get a commitment order. The program teaches that a person diagnosed with a mental illness may go through repeated commitments before becoming compliant, and that all this is normal and necessary for the consumer’s well-being. I remember hearing stories of people being committed forty or more times in their lives, but finally, finally, they came around!

    About hospital court rooms. There is not any justice happening there! Personally, I have not heard any psychiatrist, nurse, social worker or any other person who had power within a hospital court room to help get a patient committed, either short-term or sent to a long-term unit/institution/facility, who did NOT either brag about how they always win or admit that the hearing is a simple and easy process (for them to get what they want). I’ve been told not to show up to advocate for my son’s rights, because it wouldn’t do any good if I am not in agreement with what a psychiatrist is going to ask for. If judges in a hospital court room sincerely listen to and/or ever take the side of patients, that is absolutely rare.

    The so called best psychiatrists that I’ve met and know are not reading Whitaker’s book. They do not want to have the conversation about the content.

    The most recent time I mentioned to a psychiatric provider that many people do not agree with the notion that a person must take toxic drugs every day for the rest of their lives, I was told that I was, “poor,” and that, “poor people must rely solely on medication.”

    The inpatient psychiatric team who were ‘treating’ (making my son very sick), threatened us the day he left their facility. They initially had him committed by telling lies and distorting any facts available to them. Their actions were most unethical. He was not anywhere near a danger to himself or others, but they nearly got him committed long-term because they said, “They hadn’t tried it with him before and that he could be a role model for their other patients, the latter of which would increase his self-esteem.”

    The attorney who was supposed to be representing my son agreed that they (the psychiatrists) were the professionals. He also agreed that the reasons the psychiatrist used in hopes of the commitment she desired was illegal.

    They did release my son, but not because of fair or good legal representation. The discharge was only after several members of his family, an outside psychiatric provider who had been seeing him for over a year, a nurse and myself, all showed up for a meeting to dispute their wishes for a longer commitment and offer instead, a humane plan for his treatment and recovery, which existed in the community. We knew the facts, and we knew what they were doing was illegal. They did not discharge my son because it was the right thing to do or because they had done wrong. I believe the people who showed up at the meeting did surprise them and make a huge difference in the outcome, but in reality, I suppose we were lucky he made it out alive!

    “If you ever need to come back…” the psychologist, who was acting as secretary to the psychiatrist, said to us in the meeting, “If you ever need to be hospitalized again, we will make sure your Mother can’t help you. We will keep you a long time.” (This threat was made to their, “star patient,” as they called him).

    I hope I didn’t stray too far off subject. Thank you for the space to talk about these issues.

    I think Dr. Pies ought to be willing to comment here on MIA. Saying you can publish his response, but if I understood correctly, that he will not be further responding, is really not cool.

  • Psychiatrists have their own courts in hospitals. They hold court weekly. Judges almost never (if ever) listen to patients or family members, but instead, they take the advice of the so called professionals. The attorneys who represent patients get paid from the same source as the psychiatrists do. They are in the same bed and sleep together.

    Psychiatrists dismiss facts and the latest scientific research/evidence that goes against what they’ve been preaching for so long. They don’t listen when a medical doctor tells them that the drugs, “will kill the patient being treated if he or she doesn’t stop taking them.” Their response is to say they have their own MD, which means ordering regular blood work, but even that changes when a psychiatrist reads the results.

    For example, if the patient’s liver panel is abnormal, as a result of psychiatric drugs, the psychiatrist will say they do not read the results the same as a family physician (MD) does. They say, “We don’t count the surge in the number of liver enzymes, unless it has tripled.” So, not only do they have their own justice system, they also have their own way of interpreting medical lab reports.

    Although, I am deeply disturbed by the injustice and awful treatment that I have seen take place in psychiatry, and the harm that has visited my family, I am no longer surprised by anything that goes on inside the walls of psychiatric treatment.

    I would love to see psychiatrists join in on the conversations in this blog. Now that would surprise me!

  • Hi Alice and thanks for your reply. I must add that my comment, obviously, is a rather negative take on your post. I started my day off (the day I commented) with my son in the office of a psychiatrist. I guess you could say it was uphill from that point, but it was a very hard day. I have so many emotions about the way they talk to him, view him, and ‘treat’ him, that I feel I am going to explode.

    I wish so much that there were more psychiatrist who were like you, and able to serve the people who can’t afford hundreds of dollars per visit. My sincere apologies if my comment was a personal attack.

    Maybe one day you will meet more people like yourself, and you could start some type of service to help patients, and if not, then I hope your words reach many people. I hope the conversations you have, like with the woman on the beach, might enlighten a few people. The woman you describe does reflect the views of most people I meet too, and that’s pretty hard to deal with too.

    I will check out your writing, and thank you again for your kind response.

    Most sincerely,
    Michelle B.

  • Hello Alice. I have an opinion I’d like to share about this post. Why do you think the woman at the beach is the winner of the American Dream any more than you are? I mean, there you are, walking to the beach, writing in between, renting only until you can figure out what to do next, as in buying a home? It sounds like you each have the American Dream, just two different versions. Indeed, you were both at the same beach.

    I do believe your writing is worth something, but what about offering your medical expertise to people who can’t afford holistic alternative care? I understand you like writing, and perhaps that is your calling, but its too bad that a person with your education and experience can’t offer alternative help to people who need mental healthcare. And, you could go undercover, as a writer.

    Personally, I don’t see your having quit being a psychiatrist as a justice to our mental healthcare system or the people in it. Obviously, you were smart enough to get through medical school, so you could learn acupuncture or another type of holistic care.

    I hope you are writing in other places than this blog. I like this blog, but I really don’t think many psychiatrists who are still writing prescriptions every ten minutes are reading it, which is too bad. I wish they were!

  • Cindy, I agree with you and will surely sign the petition.

    The holistic provider my son and I saw regularly last year and who helped my son more than anyone has, is now able to get payments from Medicare and possibly Medicaid, but am not sure about the latter. He was so excited to tell me they were going to pay him.

    He isn’t the average alternative healthcare provider, as he has extra time for people who can’t pay what he would normally charge, but you are right. If the insurance companies would pay, then more people like him would provide services.

  • Hello Cindy. Thank you for your reply to my very emotional comment. Obviously, we are having some difficult times lately. Thanks for your well wishes too. As to antibiotics, I will not take another one, or any other drug for that matter, without first doing my own research. I did ask the doctor if the one she chose was dangerous, and she said no. I don’t understand why, since it comes with a black box warning. My ears haven’t stopped ringing, which I’ve learned can happen from taking that drug. I hope to find relief.

    About Akithesia, I’m sure glad to hear it isn’t permanent. He has cut the dose in half since we learned what was going on. We haven’t yet looked at a guide for withdrawal, but obviously, this would be best. I’ll check out the resources you mention. We know a holistic practitioner who would probably work with my son in this regard.

    I have to keep up the hope. I have lost it many times lately. Without hope, doing something simple, like making a phone call and asking for help is difficult. Being sick makes everything harder, but I feel a little better since having commented on your article.

    I’ve never felt good about Latuda. At first, I thought it was a general fear of the dangerous side-effects of antipsychotics, then later, other people noticed things, like the restlessness and faster sudden movements. It wasn’t just me.

    I told the person who had prescribed the medication about my concerns and was told that maybe the symptoms that I and others noticed was my son’s real personality showing up from the positive benefits of the drug. I knew this was not the case, but it was later, when the symptoms worsened, that they said they would, “treat him for Akithesia,” which was to take him off Latuda for two days and give him a strong dose of clonozepam. Those two days were the best I had seen my son in a while. I realized how bad the anxiety/restlessness was when I saw it go away.

    The plan next was to immediately restart the drug and stop the clonozepam as if the symptoms of Akithesia disappeared, but they didn’t. So, he is slowly reducing the medication.

    Personally, I have had positive experiences with talk therapy, as well as hypnosis and biofeedback, but those providers are no longer in my area. I have however had negative experiences as a Mother, watching the social workers who have worked with my son (taking the place of psychologists), because they have an agenda of teaching the patient/client that medication is the most important part of ‘treatment’ and managing illness means making sure not to forget medication. Also, if he doesn’t want to take medication, the programs and service providers in the area do not allow him to participate in other types of treatment, including psychotherapy. This has never made sense to me. He isn’t even allowed to participate in group functions because he may be, “a bad influence on others if he says he doesn’t take medication.” It is absurd.

    I have read the comments about poor experiences in psycho-therapy, which is sad really, but I do understand. I wish my son could find someone like the therapists that I’ve known and that it would help him. I’m glad I read the experiences people shared though. Being invalidated and told how to think is not the way counseling ought to be.

    We have met with a small group of people in an Icarus group that we both enjoyed. We also found a wonderful Temple where I think my son could find healing. The reason we haven’t been able to get out and participate more is because of my poor health for the past year.

    You are right about each of us doing what we can to change things. I will sign the petition. Thanks again for your reply and also, for your personal work to make a difference in our current mental healthcare system.

  • Stephen, Hello.

    You know, I finally understand why patients in a psych ward say the staff or psychiatrists are the ones who are ‘crazy’ or as you say, “delusional.” The same logic applies to settings outside a psych ward.

    As to counseling or therapy, I must say I’ve had the pleasure of a helpful therapist in the past who didn’t charge me or when I could pay, then the fee was affordable based on my income.

    Things have changed, I guess, and you are right about being left to the toxic drugs. Just recently, the provider who we were seeing said quite blatantly I thought, “Poor people must rely (solely) on medications.” Of course, I do not agree and do not think I or anyone must accept this.

  • PS I would like to add that the most recent psychiatrist my son saw claimed to be a holistic one. I was very excited and hopeful. That didn’t last long. The supposedly holistic psychiatrist also wanted to continue Latuda, and eventually, triple the dose. Why on earth? His conclusion was to give one of the older drugs, with the most side-effects of all because of the communication issues my son is having. My son communicates fine when people take time to listen.

    I told him that I was upset. I told him that there are many people who believe psychiatry does a lot of harm.

    “Yes,” he responded. “Those people are terribly misinformed.”

    I learned that if I had cash, then there was holistic care available at his office.

    I cried. I left crying. I left completely hopeless and have been ever since, which was a month or so ago.

    Am I wrong, I wonder? The psychiatrists say I can’t give up (on them!). They make me feel like I am doing wrong by my son by believing in radical non-believers like the folks who write on this blog.

    The truth is that I agree with the writers on this site, but I am so afraid. I am so afraid because I do not know where to turn anymore.

  • Wow. I come to this site because the articles are interesting, but sadly, my memory is severely interrupted and I can’t really comment with any good sense. I do not know if I am going to recover, so by the time I read the comments, I can’t even remember what the article read. (I suppose, my comment could be at the end of any article on this site). I can’t seem to get it right.

    My life is incredibly altered by medicine and particularly psychiatry.

    Reading the posts only gives me more anxiety because I’m too sick to do a thing about the harm done to my family by psychiatry and cannot afford the care I believe would help us; acupuncture (regularly), massage, supplements, an organic whole food diet, true counseling which I’m beginning to think that almost anyone could offer; a neighbor, sister, cousin, or friend. My dog could do a better job than most folks who are educated in social work, psychotherapy and god only knows the psychiatrists. We need people with a caring heart.

    We need what we cannot access.

    I am poor. I am disabled. My son is disabled and now, after only a few months of Latuda, he has serious Akasthisia. He has been dismissed by the doctors (ha! psychiatric Nurse Practitioners) who gave him the Latuda. The last time we saw the NP she said, “I don’t see any signs of Akasthisia in him right now.”

    I knew then, when she said that, that I could never face her again. I cannot stand the lies and coercion anymore.

    sigh…

    They dismissed him saying he would be better served at the clinic who specializes in ‘severe and persistent mental illnesses.’ The clinic doctor wanted to not only double the dose of Latuda, but triple it. If Akasthisia is permanent, then my son probably does not have a future to look forward to. I am so incredibly sorry for him and to him. I am so sorry that I ever once stood by and allowed psychiatry to screw his body up so badly!

    Poor people can’t afford any form of treatment that will get us better. Dr. Peter Breggin, at least as far as I know, does not see poor people nor offer a sliding scale fee. I called his office once, when I was less disabled and would have driven across the country to see him. I would move anywhere if I could; if there were people who could help my son and I, but we do not have the money they expect or charge.

    Psychotherapy might as well be the moon! We can’t access it anymore. Psychiatry intervenes and says oh wait, we must see you first, before you see a free resident at the supposedly free hospital. They want to get their reimbursements, which is quite a fat check!

    Psychotherapists do not want a Medicare/Medicaid patient.

    My son is now seriously physically disabled from Akasthisia, but of course, the NP who gave him the drug and treated him for two days with clonozepam, gave up on him and never saw him again after having seen him for several years.

    I feel like it is my fault because I got sick with pneumonia, then given an antibiotic, a medicine of which has made me even more ill, which I didn’t think was possible and I don’t know if I’ll ever recover.

    I’m not in any shape to fight anymore.

    I would like a therapist, but not one who believes there is any antipsychotic drug that will help my son. Psychiatrists do not care what their drugs do or how much harm they cause. There are a few psychotherapists who understand the dangers of psychiatry, but I haven’t met many. Only one to be specific and I can’t even remember her name!

    What are poor disabled people supposed to do? Just sit, or jump around because they can’t sit for even one minute without torture, suffering to no end and wait to die?

  • Wonderful essay! Walking is the best medicine!

    I tried to stop taking a benzo drug some years back, and I did stop for a few months. I started having flashbacks, and without anyone to help me, I had to go back on the medication. I never did stop having the flashback, although, it did require my investigation and I learned that much of my life has been lived in response to one particular trauma. There were other traumas that followed, but it was that one that formed my view of the world; my response to life and way of living it. So now I don’t know what to do. I read about people getting so sick from withdrawal, and I think it is just too late for me. I think the time it would take being sick is so much of the life I may have left.

    I also have an “essential tremor.” This may be hereditary. My mother is seriously disabled by this condition. Her hands shake so badly that she can’t do her crafts or even sign her name. I know there are other drugs for a tremor, and benzos are not the suggested ones. A neurologist told me that Cannabis is the best medicine in his opinion for a tremor, but that isn’t legal in NC. He even told me about two fields where I could go visit, but I was scared to go. He was a good doctor, but shortly after I saw him he had an accident and stopped practicing.

    I enjoyed reading your post. You are a terrific writer!

  • Hello. I understand this article is about addicts, addiction and the drugs that addicts manage to get their hands on, whether through a doctor’s prescription or on the black market. I believe people have been getting drugs on the black market since it began, and many times, the dealers did not get tons of pills for sale from a doctor, but instead, through other means. Doctors don’t give out a thousand pain pills at once, which can be found in the dealers’ possession.

    You say that all pain pills are dangerous. I agree to some extent, but Tylenol is also a very dangerous drug. NSAID’s cause heart disease, bleeding ulcers, and other serious health problems that can and do lead to death. Opioid medications are dangerous to an addict who has obtained them, uses and abuses them, and then dies as a result.

    A pain pill to a pain patient is often the only way that patient can live. This article doesn’t mention pain patients (unless I missed that part). Oxycontin has been changed to a form that isn’t as easily crushed. I am not sure if “addicts” have figured out a way to crush this new form.

    You mention Methadone, and say it is “prescribed to help people wean themselves off of heroin,” which is true, but it is also one of the most widely used pain medications for severe chronic pain. One of the reasons it is widely used is because it works well for severe pain, and it is cheap. Most people who live with chronic severe pain can’t take Methadone because it is too sedating and most pain patients are looking for a quality of life, and not, I might add, a way to get high.

    To talk about suing doctors who prescribe pain medication, and getting the “feds” and “Obama” involved in telling doctors what they can and cannot do, without ever mentioning the reason the pain medications are prescribed and to whom, is such a lack of respect and concern for pain patients.

    A good doctor will do the best he or she can to know his or her patient, which would include investigating if the patient has a history of addiction. Pain and Addiction are not the same thing. They are very different subjects.

    Personally, I think articles and attitudes like I hear in this article are ignorant. Talking about pain medication to discuss addicts and addiction, while leaving out important facts, such as pain medication saves lives every single day, offers life to people who would probably commit suicide if they had to live in severe chronic pain without proper medication, and dismisses the good medical doctors who are really trying to help their patients.

    Pain patients should be educated about medications. The eight hour dispensing tool is a good idea, esp., for elderly people or those who for whatever reason may not be able to follow a medication regime.

    Suing doctors will only make life harder for people who really need pain medication. Why would anyone want to do that? Focusing on Medicaid and Medicare recipients (by getting the government more involved in what medicines they can or can’t get), will make life harder for pain patient’s who are also in poverty.

    People in pain may well become ‘dependent’ on medications after using them long-term, but most pain patients do not use their medications to get high. I say most, and maybe I shouldn’t, but I’ve communicated with so many pain patients over the years, and I do not know one who gets ‘high’ on their medications.

    People in severe pain find relief and most want to live their lives to the fullest degree possible. Most of them do not want to be zombies. If pain medication is used correctly, people don’t have to keep going up on the dose, at least not nearly as often as people would assume. I think people do a lot of assuming when it comes to pain medication, such as assuming that Methadone is only used to help heroine addicts and that medical doctors only prescribe pain medication for monetary gain.

  • This is a horrible and amazing story. I am not surprised, but am surely sick to my stomach. My adult son has an appointment with a psychiatrist, and I have to take him now. I wish I did not! I can’t stand going. I may tell them just what I think.

    I am completely traumatized by what they did to him, and our family as a result, in 2011. I wish I had sued, but I did not even write a formal complaint. I’ve been too sick.

    What is a poor family supposed to do? We need support and he needs care, but I don’t trust psychiatrists anymore. I don’t think I ever will. I am sick knowing that I can’t afford to get my son the kind of care he needs. I am sick from not knowing what to do anymore.

    You are amazing! I am glad to have read this post, even though, the way the APA folks responded (or rather did not respond), is extremely disturbing. If you (or anyone) doesn’t agree with them, then you (or anyone) is dismissed.

    Sigh…

  • Hello, and thanks again, for an inspiring post.

    I wish very much there was a place like this near North Carolina. My family and I, which is a very small family including two dogs, truly need a place for respite and healing. Providing 24/7 care, which is what I’m doing right now, is very difficult without help from people who could actually understand what it is that is needed.

    If I had to say one thing that is the most troubling to the mind of the person I try to care for, it would be loneliness. I believe it can drive a person mad.

    I’m tired of hearing people say, “He needs services,” or, “Don’t you think he needs an ACT team?” and blah blah blah.

    An ACT team made enough money over the course of several years from ‘serving’ our family for me to build a residential treatment community and have enough left in savings for a decade. If I included the hospital bill from not so long ago, well, my goodness, we’d have everything we needed for life!

    So, yes, we are in a crisis, but people don’t get it that eight long years in the mental healthcare system pretty much did us in. I don’t know who is more traumatized, my relative or me. I can finally honestly say, I truly feel that psychiatry brought harm to my family. If I could only go back in time…

    Again, I wish so much that we had services around here other than the pill pushing teams of psychiatry and social workers. ACT is taking over and folks think they are the cream of the crop. If I try to say what happened to my family, people look at me in a way that suggests they don’t believe it. If they did believe me, then they wouldn’t later say, “Maybe it’s time to consider ACT again.”

    Sigh…

  • Peer support has always sounded like a great idea to me. I have a hard time keeping up in cyberspace, but I’d surely be up for participation. I’ll check out the link for the survey.